Gordy’s story

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Gordy and ACC

By Linda

Gordy is 5 years old. He has ACC, a large cyst in his brain and epilepsy.

My pregnancy was very easy, and nothing was noticed. But when I was giving birth things went wrong, I had an emergency caesarean. During the hospital stay the doctors noticed his head growing. Each day it grew another centimetre. An ultrasound noticed a mass in his brain and he was transferred The Children’s Hospital.  He had a MRI and at midnight it was explained that he had a large cyst growing in his brain and in the morning they were going to operate to puncture the cyst and relieve the pressure inside his head. He was 4 days old.

It was a very scary time, but the neurosurgeon did a great job and Gordy recovered quickly. A few days later we were heading home. I thought that was it. My baby was perfect. We went back for a follow up MRI at 6 weeks and doctors were happy with his progress.  A few weeks after the MRI results arrived at the house. There were a lot of medical terms so I opened up google and started looking for answers.

Agenesis of the corpus callosum was one of those terms. When I googled I was in tears. There is a lot of information out there. I was overwhelmed by all the stories. I needed a hand,  I needed someone to talk to. I found an American group and joined ‘the listserve’. Here I was put in touch with Australian families. This is where I met people in same situation – yet nothing was the same. gordy 4

Things settled down for a while. Even ran smoothly. Gordy developed well, just a little slower than his big brothers, but nothing too concerning. At 2 years we were advised that the front of his cyst had closed up and it would be best to operate and puncture it again. Same neurosurgeon, same great job and he came home 3 days after surgery.

On the 5th day after the operation things went wrong. He had been playing in his room and when I went to get him I noticed something wrong, but I didn’t know what it was. He had been sitting on his folded legs in his room and when I picked him up he was stiff and staying in that position. His arms were doing a strange thing too, sort of open and jolting together and apart. I was really confused and I carried him out to my husband saying something is wrong, I don’t know what he is doing. We watched him for a little while and it slowly dawned on me he was having a seizure. We called an ambulance and I went with him in it to the hospital. He was injected twice with the emergency rescue medication. The 2nd dose kind of knocked him out and it was while he was out that his brain stopped the seizure and he slept of the effects. The seizure had been 40+ minutes long, and the scariest thing I have ever seen.

gordy 3Gordy stayed in hospital a few days and was started on anti-epileptic medication. It was assumed that his brain was adjusting from operation and medication would give his brain some protection while it adjusted.

After a few weeks we seen the doctor and had to change the medication, Gordy was sleeping about 20 hours a day. One of the possible side effects was sleepiness. He started another medication and things went well. 6 months after the seizure he hadn’t had anymore seizures and he was weaned off of medication.

Another 6 months passed well and then Gordy had another seizure. This time it was early in the morning. His big brother was 8 years old and found his brother acting strange. He thought Gordy had seen a ghost and was white and scared so he brought him to us. My husband and I watched him for a little while before realising it was another seizure. I panicked more than anyone and I bundled Gordy into the car and drove him to hospital. Bad decision, we had moved recently and it was a 25 minute trip to hospital. The whole time his seizure was building and I watched him in my rear view mirror, regretting not calling the ambulance. I carried him into the emergency waiting room, crying. Nurses helped us straight out to emergency resus station and doctors appeared from everywhere. Again he had 2 doses of the emergency medication before being knocked out. This seizure would have been approximately an hour long.

He was put back onto medication, with great success. But the seizure did return. 6 months after 2nd seizure was his next seizure. After a day helping in the grounds of older kids school, so early afternoon he had a seizure. A month later, during nap time at daycare.  A month later, a month later and again another month later. His medication was increased each time,  then the side effects from that one got too much so a new one was added. The side effects from that was aggression and he was very aggressive.

gordy 6We were referred to neurologist at that time and he suggested a new medication and this one worked well and seizures stopped. Unfortunately side effects were really limiting to Gordy’s development and well-being. So it took a lot of fiddling to get the right dose. In the end Gordy was only on the latest medication on a very low dose. Side effects were minor and no seizures for 9 months. Medication was increased a little and he had 15 months seizure free… another seizure just a month ago.

Something the doctors don’t explain very well is the medication can be just as horrible as the condition. I believe the medication is reducing Gordy’s mental capabilities. During the last 4 years of seizures and medications and still growing and developing  Gordy has had many assessments for different areas of development. I know in that period of 6 months of seizures and medication adjustments and trials Gordy’s development almost stopped. Then when it resumed again it was much slower that it had previously been. Gordy started his life at a slower development to ‘normal’ and now the medication and seizures had slowed that further.

Gordy is almost 6 years old now. He is in a mainstream school and unfortunately does not qualify for any additional assistance at school. His teacher does see his extra needs but it is hard to provide that attention while in a 20 child class. They have been able to gain some teacher’s aide support time but Gordy doesn’t qualify on his own for that. He has assessments saying he is mild to moderately delayed intellectually, but unfortunately there is not ACC box on the forms to tick to gain that support.

Gordy does occupational therapy and speech therapy with private therapists who will do this at the school. This way the therapists are able to provide support and alternative methods to his teacher, as well as helping Gordy in class activities and social situations. I also take him to see them monthly so I can keep current with what he needs to be doing. I also take him fortnightly to physical therapy. He sees paediatrician regularly aswell as neurosurgeon yearly and now sees neurologist yearly too.

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A year ago I noticed Gordy had a slightly lazy eye. He sees an opthamologist. The squint became more noticeable and now his eye is very crossed.  He started to wear glasses pretty much straight after seeing opthamologist and now is on the list for surgery to correct his eye.

The development delay, intellectual delay, turned eye and epilepsy could all have many causes, or could all be from the agenesis of the corpus callosum. This in turn most likely happened because of the large cyst that probably happened as a one off rarity 1 in so many 1000’s of cases type occurrence.

Talking to other mums of ACC has helped me find similarities and differences in all our kids. It is a definitely characteristic that they are often happy easy going kids. That they are likable and well liked people. They are loving and inspire love. The more families I meet the more I am able to pick out this characteristic and another that are common between them, but at same time there is so many differences. We need more research and to speak freely to more families. The support from another mum that says ‘my child does the same thing … when we tried this method things improved … and when we tried that therapy things got worse…’ that knowledge in priceless, and I love meeting new families and saying ‘hey you should meet family X their child did similar, or family Y did that therapy, and family Z went to this specialist.’ Through AUSDOCC I am getting more support and the chance to welcome more families to our support.